Category: working dogs

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

“Tag” You’re IT

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Chloe and I were recently in a Wal-mart shopping. In the household cleaning section, one doesn’t expect to run into a child. Among the 4 or 5 other shoppers and carts stood a 5 or 6-year-old little girl. I don’t know how she ditched mom, but she was obviously unsupervised. She was about 20 feet away when she first caught sight of us and slowly made her way down the isle towards us. Inwardly I cringed… for I didn’t really feel like asking her not to pet Chloe. Instead she got close enough and looked at Chloe’s vest (although I’m not sure she could even read), and then at the side of my head where my cochlear implant and BLING sparkle for all the world to see!

She smiled at me and said, “This is a WORKING DOG”.

I replied (with some surprise), “You are EXACTLY right! Chloe is a working dog”.

Unsure of what communication might follow that exchange, she smiled impishly up at me… reached over with her index finger an POKED me while exclaiming, “TAG! You’re IT”. With a squeal she was gone and around the corner with pony-tails flying behind her.

Service Dogs and Play

Chloe’s tail started wagging and she looked up at me with an expectant, “Yeah! Let’s go!”

I just grinned at her and caught sight of a lady about 3 yards from us just grinning from ear-to-ear, having seen the whole thing. I smiled back, calmly walked by her and just as I was passing her – reached out and poked her while saying, “Now YOU’RE it…”  She burst out laughing and we went on our way.

I am asked occasionally if Chloe is ever allowed to play. Most recently this came up at a DEMO we did for the Department of Disabilities for the state of Maryland. I think people love the idea of working dogs, but often wonder if the dog is ever allowed to be “just a dog”. We always assure people that our dogs have plenty of opportunities to rest, play, and just be a dog. They are frequently rewarded throughout the day with treats, praise, and physical touch. Walmart is not the BEST place to induce Chloe to play, so I opted out of the game of “tag”… but I can assure you that Chloe is allowed to play with our family dog, and with family members very often.

All Work and No Play

Just like people, dogs need down time. Especially working dogs IMHO. But we could learn a few things from our furry partners. Chloe often naps when waiting in line at a busy cash register, or if we are traveling by Metro, airplane, or even the family car. She knows when to rest and get some shut eye. She also knows when to play and enjoy a major tail-wagging romp! I try to remember to take “5” and rest when I can. I try to get 8 solid hours of sleep each night because I actually hear better, and walk more steady if I make sure a good night’s rest is priority.

Perhaps we should all play tag from time to time. Hey! It is good exercise, and I’ve not met anyone yet who didn’t smile after being tagged!

Denise Portis

© 2011 Personal Hearing Loss Journal

Idiot Lights

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Don’t you love “idiot lights”? And if you know me, you know that I pay attention to them. (Gulp. Does that make me an idiot?)

I’m one of those people who drives 64 MPH in a 65 MPH zone. I always stop on red even if it is 2 A.M. and no one is around.

Needless to say since one of our car’s “idiot lights” has been telling us for 3 months that the oil needed changed, I’ve been bugging my husband to take the car to get the oil changed. The fact that the “Jiffy Lube” sticker on the windshield ALSO said the oil should have been changed at the end of MARCH, only further compelled me to NAG. His insistence that the manufacturer’s guidelines and the lube center’s guidelines differ, does not instill a lot of confidence in me. After all… the car’s “idiot lights” told me the oil needed changed as much as that sticker on the windshield! You see? My husband is PURE GENIUS when it comes to computers. He can do a number of “handy man” things around the house thanks to having worked at Home Depot while in college. But cars? Nope. I’ll just reiterate that his stating “not needed” – failed to inspire confidence in me!

According to him, the sticker always indicated changing the oil much sooner than needed. Instead, follow the manufacturer’s guidelines. How about those “idiot lights” though?

“Everyone knows those things rarely work right. You have to get them reset after getting your oil changed AT the car dealership. I don’t ever go there for oil changes!” he replied.

Evidently (according to hubby) “LOW FUEL” actually means you can drive another 100 miles. “CHECK  ENGINE” may very well be an irregularity that has to be re-set occasionally and is often reported as a problem with the model. “LOW TIRE” means you are parked at an incline and the car “thinks” it has a low tire. Sigh.

If People Had Idiot Lights

Wouldn’t it be grand if PEOPLE had idiot lights? You could meet someone for the first time and know some things without any words exchanged. You’d see a flashing:

Needs Work

Snores Loudly

Back Stabber

Yup… it would make life a little easier. We would know what to expect of a person before ever expending any emotional energy to get to know them! EXCEPT… my husband insists those idiot lights aren’t accurate. So that could mean that the little warnings we get about people we meet may be false.

The reality may be:

Works WELL

SINGS loudly

And Back SCRATCHER

If Dogs Had Idiot Lights

How about if working dogs in training had idiot lights? It might help trainers determine who would be best matched with particular dogs. It might help puppy raisers find out about the personality of the puppy they are raising to be a working dog. Perhaps a dog in training would have idiot lights such as:

Stays Calm

Very Instinctive

Easily Potty-trained

And Chloe’s may have been:

Ah… but remember? The idiot lights are not accurate. After all, trainers tell me Chloe was an incorrigible “hard-to-train” pup. But she is a hard-working, completely engaged, working adult dog. Thankfully, I can manage the occasional unfeminine “toots”.

Idiot Lights and First Impressions

Just as idiot lights for vehicles seem to be more bother than help, rarely providing accurate feedback, so too may “first impressions” fail us. People who come across as prideful, pompous, and bossy may actually be insecure. Controlling people may get on your nerves, but they often are the ones who can easily make decisions and get things done. I’m not saying this can’t go wrong. We would not see abusive relationships if it never went wrong.

What I am beginning to realize in this game of “life”, is that first impressions are often wrong. A quiet, reserved individual may actually make a warm, loyal friend if you work a little harder to get to know them. A loud and obnoxious know-it-all may actually have some insecurities and may thrive in a relationship that allows them to not have to work so hard at being perfect.

I’m all for boundaries. One of my favorite books is “Safe People: How to Find Relationships that are Good for You and Avoid Those that Aren’t” by Henry Cloud and John Townsend. However, we cannot allow our first impressions to “warn us off” people permanently. I think boundaries are set up AFTER we really get to know someone and identify they are not a “safe” friend or family member. But first impressions? Leave your brick and mortar at the door when you first begin to get to know someone. Sure, you may get some vibes that have you treading carefully as you work with a person or attend small group with a person. But how many of our relationships would we NOT have if people relied solely on first impressions? I think of the first impression others may see in my own life:

“I thought you were so stuck up when I first met you but eventually learned you could not hear in crowds”.

“Because of your BLING and service dog it was obvious you had some disability of some sort. In getting to know you, I often forget you are deaf. You are as normal as anyone else!”

“When you first asked for the main points of the meeting to be emailed to you I thought that you were basically asking for special privileges. Little did I know after receiving the “recap email” sent to the entire department that I missed a lot of important notes from the meeting too. This step helps ALL of us.”

If first impressions are a type of “idiot light”, we should remember that they are often wrong. Extend the benefit of the doubt to people who rub you the wrong way when you first meet them. In time you will discover if you had good intuition and need to erect some safe boundaries to interact with someone. However, you may learn that it was really a smoke screen that hid a wonderful person who simply had trouble letting the real “soul” show.

—————

I was so thrilled when my husband brought the car back this past week and said all the fluid levels were checked, oil changed, filters changed, and tire pressure checked. However, as I Headed to work on Thursday I happened to look down at the dash and lights. I grimaced as I saw the “CHANGE OIL” scroll across the bottom of the display. I tore my gaze back up to the road and mirrors and began to chant, “Idiot lights are inaccurate. Idiot lights are inaccurate…”

Denise Portis

© 2011 Personal Hearing Loss Journal

Soul Surfer

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My daughter was home for Easter weekend so the family enjoyed a rare night out to the movies. The movie “Soul Surfer” had been recommended to us so we chose to attend on Sunday afternoon. I was in a bit of a huff when I arrived due to some family conflict, missing the first part of the movie while I sat and fumed. (Yup… I definitely need to learn to fume a little quicker).

Once I started paying attention, however, I really enjoyed the movie. When you “hear again” with a cochlear implant, you really do have to make the concentrated effort to PAY ATTENTION as listening is no longer a passive exercise – rather an active effort. On occasion, I’m lucky to snag a movie we are attending that is open captioned. I do not have to focus with nearly the same concentrated effort when the movie is open captioned. As it was, I finally TUNED IN and really enjoyed the movie. I won’t spoil it for you in case you haven’t seen it, but basically a teenager learns to live life differently due to circumstances that were neither predicted nor expected. She learned that “in spite of” she can continue to make a difference in the lives of others… to touch souls.

Individuals with acquired disabilities of any kind have to do the same, don’t they? I mean the alternative is isolating yourself and giving up. That isn’t a life I’d wish on anyone. (Believe me I know, because I tried it for a short time!) It takes a lot of courage to persevere and learn to do some things differently when life throws you a curve ball. I’ve always been a lousy “catch”, so wouldn’t you know when my own disabilities took hold and changed my life that I was totally unprepared?

I was at a Fidos For Freedom training with my assistance dog one Saturday and a fellow client that I have come to know quite well wasn’t at all surprised by a blunt question. We had learned to be “straight” with each other early on because we discovered that by doing so we could learn from each other. She is a client who has been matched with a service dog trained to assist her with mobility tasks. Having experienced a recent “wet week” due to spring showers in our area, I asked her how she found the wherewithal to come to trainings after having a “bad week”. She has had to learn to do things differently because of her disability and must prepare well in advance when attending trainings that other people may be able to spontaneously decide to attend! She said, “I simply remember that by coming I have opportunities to encourage someone else. I don’t want to miss those opportunities so I get my butt out of bed!”

I’ve never met anyone that was not able to MAKE A DIFFERENCE in the life of another. I don’t care who you are or what your circumstances are. The only necessary ingredient to successfully touching the life of another is BEING WILLING. If you aren’t willing, it will never happen. People with acquired disabilities have learned to maximize technology. We have learned to perhaps do something DIFFERENTLY in order to accomplish a task. We have also learned when to cut ourselves some slack. People with acquired disabilities have learned to ask for help at times. We are malleable, persistent, and BRAVE. No worries. I’m not “tooting my own horn” here, I’m simply pointing out the obvious having met numerous people with acquired disabilities.

Surfing for Souls

There are numerous ways individuals can make a difference. My “short list” is below. Feel free to leave comments and add to this!

1. Join online support groups and be active in the group. Reach out to others who are perhaps struggling with a new acquired disability.

2. If possible, participate in local support groups or chapters that meet physically each month. Go prepared to learn, but look for opportunities to serve.

3. Be open and honest. Don’t hide the fact on your Facebook. Don’t make your disability invisible. Visibility allows others to see you active in your community, doing things others do without thought. Shopping, church, or GOING TO THE MOVIES are all activities we can still accomplish. Welcome questions and be prepared to be a positive advocate.

4. Have business-card sized cards available to give to people who stop to ask questions about the: Cochlear implant bling, service animal, hearing aids, wheel chair, walker or bright purple cane! In this way they can contact you at a later date and ask questions in a more controlled, confidential way. They may need the information for themselves, or for someone they care about who struggles with their own acquired disability.

5. Don’t apologize for being different. Celebrate it!

6. Advocate, advocate, advocate! When the support groups and organizations to which you belong do annual fundraisers, DEMOS, or community service appearances, do not hesitate to get involved and advocate! At times you will be called upon to write local or state government officials. Take the time to do this!

I remind myself as I encourage you to do the same. I need to be be aware on a DAILY basis. I can surf for souls to touch. I can make a difference!

Denise Portis

© 2011 Personal Hearing Loss Journal

Hypervigilance vs. Awareness

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Where is she looking? What does she see?

Being “aware” is a natural state for me. I think anytime an individual loses one of their five senses, they learn to compensate by being more aware of things around them. When all five senses are working, input is sent to an individual’s brain about their environment, people around them, etc., to help them determine if any action should be taken. However, when a sense goes “missing” as the result of acquired disability, accident, or illness, individuals have to learn to compensate.

Now that I have Chloe (my hearing assistance/balance assist dog partner from Fidos For Freedom), I have changed from a hyper-vigilant state to simply being more aware of my surroundings. You see, now I depend on HER. If I’m watching my partner as I should, she hears and then sees things I often miss. I’ve learned to pay attention to her body language and cues, as well as visual focus and reactions to stimulus around us (such as a sudden, loud noise). Do you know my blood pressure has gone down since I’ve been matched with Chloe? Hypervigilance is a negative state of being.

Psychologists define hypervigilance as an enhanced state of sensory sensitivity coupled with an exaggerated intensity of behaviors in response to possible threats. Hypervigilance is often accompanied by a state of increased anxiety which can cause exhaustion. People who are hyper-vigilant often stay in an abnormal high state of arousal and respond to stimuli by constantly scanning and detecting possible threats. Individuals with PTSD (post-traumatic stress disorder) often exhibit hypervigilance. Why then would a person who loses a sense,  struggle with hypervigilance? I do not believe that people with acquired disabilities start out being hyper-vigilant. I think it evolves after an individual experiences something very negative as a result of having lost a sense. For example, I do not remember the exact day and time – but I do know that in June of 2003, I was shopping in a retail store and was stunned by the reality of how dangerous being deaf can be. I was scanning the shelves for items and a person evidently needed by. I didn’t hear the “excuse me” or whatever was offered to let me know I was in the way. The woman pushed passed me fast and I ended up flat on my face on the floor. I rolled over and looked around to see her standing there indignant (and not at all apologetic) demanding, “Why didn’t you move?”

“I’m sorry – I’m deaf”, I replied. She had the good grace to at least blush, pushed her cart and hurried away. I was so shook up that I left my cart where it stood, gathered my things, and left. I vowed from that day forward that I would do everything in my power to make my invisible disability more visible. I went through a fairly stressful number of months after the incident and became hyper-vigilant whenever I left the house. I stayed in a state of exhaustion because of it. Enough time went by that I eventually learned to relax a little and just work at picking up good awareness habits. I wear my hair up so that the technology I use is visible. In 2005, I was implanted with a cochlear implant that served to reduce my tension even more since I re-gained the ability to hear. After I was matched with Chloe, “being aware” became even easier. In training, an oft repeated phrase we hear is, “Trust your dog”. In the beginning it is very difficult to do because we are not accustomed to doing so. It takes practice to eventually instill the HABIT of trusting our dogs.

I got a lot of flack this last fall from extended family members for taking my dog to the hospital with me when my daughter had emergency surgery. My family members who do not live with me do not understand that Chloe isn’t a “crutch” – she’s a tool. I use Chloe to be more safe and more aware of my surroundings. My husband and I very rarely go someplace without Chloe. However, occasionally we do go to places where we leave Chloe at home for her safety. These places may include: ICU areas of a hospital, zoos (where animals may become agitated since they want to eat Chloe), or to places that may have guard dogs (such as jails, etc.). When we occasionally go to amusement parks, I do not ride fast rides because of my balance issues. However, someone with an assistance dog may determine that these places are not good for the dog to be either. You can’t exactly put a dog on a roller coaster! So when I happen to be without Chloe, my husband has noticed that I am startled more easily because I don’t have anything alerting me to things I miss on my own.

I do not take Chloe with me to stores, church, and restaurants when I’m visiting my parents. They do not welcome the attention she draws. It is their home and I respect their wishes. I’ve had folks tell me, “WE will be your ears and watch out for you. You don’t need Chloe”. However, when I’m counting on people to cue me it never actually happens. People ignore many sounds that are just background noise to them. I’ve noticed that my parents can be having a conversation and stop on the curb while I just step right out into the road, unaware that a car was coming because they blocked my view of that direction. I have to be much more careful. I’ve also noticed that as a result of having a balance disorder, I stumble more when Chloe is not with me. In throngs of people, individuals “bump”, “crowd”, and invade the space of people around them because they are in a hurry. When I have Chloe with me, people notice and take care to stay outside my immediate perimeter. I’m rarely jostled or bumped when Chloe is with me. As a result, I fall and stumble less.

So Chloe does reduce my anxiety and create a different kind of awareness. I’m aware of HER. I depend on her. Having said all of that, having an assistance dog is not for everyone. In some ways it is like having a really smart toddler around. She investigates things with her nose, and yet I don’t want her to put her nose on every thing we come across. So I have to remind her “head up, Chloe” and be aware of things at her eye level. For example, because it is Easter season, going to Wal-mart means I need to be aware of all of the stuffed bunnies and ducks often at her eye level. Stores put them there so a child will say, “Mommy? Can I have this?” Well Chloe would like them too! So I have to be aware of her at all times.

At Fidos For Freedom, teams do a “meet and greet” activity. I HATE THEM. This activity is very hard on the people there who have a hearing loss. The idea is that you put your dog in a safe place and then communicate with another person or a couple of different people in a group. When you have a hearing loss though, you have to see the person’s face if you are in a large, noisy room filled with other groups of people talking. So it is difficult to make sure Chloe stays “safe” and STAYS PUT while actually carrying on a conversation. The activity is one of those “necessary evils” we endure so that we know what to expect in public – in REAL life.

I have heard people with hearing loss bemoan how difficult it is to carry on conversations when there is a “hub bub” of chatter around them. Sure, I may have a special program on my cochlear implant to help eliminate background noise, but it is not perfect! It is hard to concentrate on the speaker! Add to that trying to make sure your partner is in a safe place, only adds to the stress level a bit. So although Chloe eliminates much of the stress in my life, it can add to it as well. I don’t know that there is a good solution for “group meet and greet” for a person with hearing loss also partnered with a dog. (I’m open to any ideas though – grin).

Ok? SO?

Today’s post comes as the result of an email I received last week. With the person’s permission, I asked to blog about her question. “How do I know if an assistance dog would help me? Is it more trouble than it is help?” These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:

1. Am I OK with the attention having an assistance dog draws to me in public?

2. Am I OK with people stopping me and asking what the dog does for me?

3. Am I OK with having to pack a “bag” to go anywhere in order to make sure I have the things needed to travel with a dog?

4. Am I OK with occasionally being confronted and denied access?

5. Am I OK with having to care for and groom a dog daily?

6. (Because of #5), am I OK with having to invest in stock in LINT ROLLERS?

These questions and more are important things to consider if you are thinking about getting an assistance dog.

For me, the #1 benefit is that I am more relaxed and at ease in my awareness. I no longer feel the need to be hyper-vigilant and I’ve learned to trust my dog.

Where Can I Get One?

Self-training or Hiring a Trainer:

Countless owners have “self-trained” their dogs to perform specific tasks. There are pro’s and con’s to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person with hearing loss. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in “puppy selection”.

Some links to get started:

http://www.dogpawsability.com/

http://sdog.danawheels.net/ot-adog.shtml

http://www.amazon.com/Teamwork-II-Training-Manual-Disabilities/dp/0965621618

Training Organizations:

There are numerous organizations from which a person can get a “program” trained dog. A list compiled by Assistance Dogs International, can be found at:

http://www.assistancedogsinternational.org/membersstatecountry.php

Another list can be found at: http://wolfpacks.com/products/servicedog/trainers.html

Many programs offer training and a dog at little to no cost, as they depend on the generosity of donors, sponsors, and volunteers. Others have ways in which you can help to raise money for the dog being trained for you.

Every state has similar requirements for a hearing assistance dog, but I always carry my ADI guide to Assistance Dog Laws. A copy can be obtained at: http://www.assistancedogsinternational.org/guidetodoglaws.php

Feel free to email me if you have additional questions!

Sincerely,

Denise Portis

© 2011 Personal Hearing Loss Journal

Disabled (Grimace)

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Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

We Are All Ambassadors

Published on by hearingelmo3 Comments

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

What’s Different? Not So Sure About This After All…

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Saturday Chloe and I were both very excited about finding ourselves on the road to Fidos For Freedom in Laurel, MD, for training. We recently moved so that my husband wouldn’t have to travel 90 miles (one way) each day for work and have finally unpacked the last box. With no other pressing responsibilities or priorities in my way to keep me from attending training, I gratefully got up and prepared for a training class.

The closer we got to Fidos, the more Chloe whined. I love hearing her whine because it reminds me that I CAN. In a close environment like the car, I can always hear her “dog noises”. Sometimes outside or in the house I may miss that. (Part of the reason she comes to actually GET me for an alert…) By the time we parked, Chloe was practically clapping her paws together. (Well – yeah, that is impossible, but you get my meaning…)

After warming up on the training floor, Pat (Director of Training) set up some benches for a recall exercise. Now Chloe has recall exercises down and rarely breaks a “stay” command. I can turn my back on her, practically “hide” behind another client, stand 100 feet away, etc., and she will stay where I put her until called. This didn’t come easy for her in the beginning and she managed to cause many a trainer to pull their hair out. Pat had Chloe and 2 other dogs sit within the “box” she made with benches in the middle of the floor and we did a “regular” recall exercise. Imagine my surprise when Chloe broke her “stay” and headed right for me without being called. She responded to moving dogs around her instead of watching me. I put her back where she belonged and set about to try again. Pat was “speaking in my head” (via t-coil and the looped training room) that we should not be surprised if our dogs don’t respond as we expect because “SOMETHING IS DIFFERENT“. With that thought going through my mind I determined to watch Chloe’s body language more closely this time. As soon as I sat her down and went some distance I could tell she was nervous. Although she was staying in a “sit/stay”, she was juggling her body weight and fidgeting. Her ears were down and her eyebrows were crinkled as she looked at me across that distance.

Something was different. It was minor. But golly did it make the biggest difference to my otherwise well-adjusted hound dog! One minor change and she was unsure and ill-at-ease. Likely because I was making an effort to really pay attention to her body language more so than usual, I could tell that for the remainder of the training hour she was unsure of herself.

We approached those same benches later in the hour for an “under” training exercise. Pat advised us to remove correction collars because for many dogs this was “new” and we didn’t want to accidentally tug and give them even a minor correction. I removed Chloe’s leash/collar (and other than a quick interception as she made a bee-line for “her trainer”), coaxed her under those benches and through the exercise in a matter of minutes. Others may not have noticed. I did… because I was taking the time to notice. For even something that was “easy” for her… she was still trembling in approaching those benches. I could see the hair on her legs shaking. She was more confident because of my proximity, but still unsure of this “different”, staged set-up in the middle of the floor. These “different” exercises are good for our dogs. It helps them respond with more confidence when something happens out of the ordinary in public.

What’s Different?

It’s amazing to me how the smallest change in my environment can influence how well I hear. For example, having moved to a home with few carpeted areas, I’m dealing with hearing in an ‘echo’ and having some sounds “bounce around”. New place with no carpet – small change! Yet it still makes a difference in how well I hear.

Two men with very similar voice/speech patterns can be talking to me. Slap facial hair on one of them and I may have more difficulty understanding one over the other.

My new home has very narrow staircases. I can actually ascend and descend at a normal pace! The staircases at work, however? They are much wider and open, in architecture with higher ceilings. Both staircases take you up or down… but the wider, more open ones cause extreme vertigo while I can practically jog up and down the ones at home!

I can “circle left” on the training floor with Chloe and have no problems. “Circle right” practically knocks me on my butt though! When your world constantly defaults to spinning in a counter-clockwise direction, turning the opposite way can be problematic! I can go through revolving doors that go counter-clockwise. I have learned to avoid the ones that turn clockwise! Small changes can have a big impact.

Cumulative Effect of Small Changes

I try to be independent and confident. It’s one of the reasons I chose to be partnered with an assistance dog. I didn’t like having to rely on my family to tell me my phone was ringing or to pick things up for me that I dropped. I can be determined and full of “I am WOMAN – hear me ROAR” attitude and still find that small changes can have a cumulative effect on me. If I’m tired, sick, emotionally spent, stressed because of finances or work, “at odds” with a friend or family member, or haven’t given God the time of day lately, I find that the cumulative effect can really knock me off my feet (which sometimes may be quite literally!).

I’m a real believer in trying to recognize “red flags” and control what you CAN. Getting 8 hours of sleep every night for me is actually a main priority. I’ve had my peers ask, “How in the world can you get 8 hours of sleep EVERY night? Who does that?”

I do.

If I don’t get enough rest, it influences how well I hear and affects my balance. But ya know? As a friend recently emailed me and explained… “life happens” – planning, preparation, and “best intentions” sometimes fall short. Numerous “small” changes and differences occur in our normal routine that can ultimately have a big impact on how well we function – living with disabilities. I think we have to be on the look out for this cumulative effect. We may find we are getting sick more often. Perhaps if you’ve struggled with depression, you may find that you are feeling down more often than you were. Maybe you just NEVER feel completely rested.

Yes.

The reason you may not be hearing as well as you were (or whatever acquired disability you may be dealing with) may be that you simply need a new “map” (for those of you who are CI users), or a new hearing aid. Maybe your family have just gotten lazy and have forgotten that they need to face you. You may need to have a “family pow-wow” again. But sometimes? Sometimes we aren’t hearing well because all of these small changes have snowballed into a major cumulative effect on our hearing. Sit down and make a list. What changes have been going on in your life in the last week? The last month? The last year? You may find that numerous “small” stressors have taken their toll. Bramston and Mioche (2001) found that as people with acquired disability engage life with a higher stress level than someone without a disability, it may only take a small change to create problems for us. I think those of us who have lived with hearing loss for a longer period of time have discovered some tried and true coping techniques. In experiencing some “life happens” moments, we may even have a “plan B” set of responses that enable us to continue to live successfully and victoriously! The funny thing about life though? It likes to throw curve balls occasionally. We need to be wise enough to recognize a series of small changes have occurred that is keeping us from maximizing our potential.

Take a time out.

Regroup.

Ask for advice (and prayer).

Make any necessary changes.

Start again!

Don’t make the mistake of thinking you have this exercise “nailed” like Chloe did. One small change may make you realize things are not as they seem. The first flurry of activity and scrambling of peers may have you making a bee-line for your “mommy” too!

Denise Portis

© 2011 Personal Hearing Loss Journal

Bramston, P., & Mioche, C. (2001). Disability and stress: a study in perspectives. Journal of Intellectual & Developmental Disability, 26(3), 233-242. Retrieved from EBSCOhost.

Frost Heave

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picture from blog post at: Herding Grasshoppers

I recently read a post from one of my favorite bloggers. I love Herding Grasshoppers and NOT just because her son is hard-of-hearing. She is witty, adventurous and “real”. I rarely walk away form reading one of her posts without a smile on my face.

She recently posted about “Needle Ice” and frost heave. I was very intrigued. I’ve seen frost heave when walking trails before, but wasn’t really aware of what it was I was looking at. After reading her post I immediately went to look for more information about this phenomena. Frost heave occurs when moisture-retaining soils freeze in cold temperatures. As moisture sinks into the ground the freezing temperatures cause the water to freeze into ice. When water freezes… it expands and creates pressure. The soil presses up and may expose the roots of plants and has been also known to bring rocks and pebbles to the surface. Take a close look at the picture. The ice crystals have actually brought small rocks and pebbles to the surface. Once this thaws, the rocks and pebbles are left on top of the ground. One would almost think someone had “planted rocks” in an area that may have once been clear of them!

What “Heaves” out of you?

I have given a lot of thought recently about what kind of thoughts and actions are seen in my own life when the going gets “rough“? When my life becomes saturated with a seemingly endless bombardment of trials, problems, set-backs, health problems, and struggles, I am often left pleading with God “PLEASE! Not ONE more thing!” But ya know something? God must know my limits better than I do. Because there have been some difficult times that I have prayed and pleaded “not one more thing – thanks so much“, only to have a blast of cold air on top of my already “saturated life”. Exhaustion, pain, fear, depression and plain ol’ “bad attitudes” may have HEAVED to the surface of my life. These things are usually hidden. Some of the heaving exposes some thoughts and actions that just aren’t pretty. Some of it is just “junk” and “rocks”. The “heave” may expose “roots” as well and leave areas of my life vulnerable.

This past summer, I was having a pretty difficult time. I was doing my best to stave off depression as it is an unwelcome visitor that worms its way into my life at inopportune times. I was to the point of pleading, “Not ONE more thing God – please! Hello? Are you listening?” The next day Chloe was hurt in the park. For whatever reason (as we often will not understand this side of  Heaven), God allowed ONE MORE THING. Chloe’s foot took a really long time to heal and I even had fears she would ever be able to work again. Yes, she is special to me because she is my hound dog and  “doggie friend”, but she really enables me to be more independent too! What would I do if her foot would not heal? During the months (yes you read that right) that followed a lot of “stuff” heaved out of that pressure and into full view – especially to my family. It wasn’t all pretty. I was cantankerous (a nice way of saying PAIN IN THE BUTT) and aloof. I knuckled down and did the things I HAD to, but did not exert myself to do anything else. I had a major pity party several months long.

But not everything that HEAVES out of our saturation point is bad. Sometimes we discover that in spite of disability – we are very ABLE. You learn pretty early on what you CAN do, and end up doing it really, REALLY well. My saturation points have received an extra dose of FREEZE and heaved up compassion for others, patience, encouragement, and determination. I may stand and look around at the defrosted ground and spy a rock here and there. But sometimes? Sometimes I see beautiful geodes or prisms. I’ve not discovered a diamond yet – but heck. I’m only 44. I’m certain I’ve a great number of frost heaves in my future. Diamonds come with maturity. (If you ask my family – I’m not exactly THERE yet).

Have you experienced difficult times? Things that have happened in a life that already seemed completely saturated with problems and struggles? Don’t fear the weather forecast of overnight “freezing temperatures”. Meteorologists are RARELY accurate! If they happen to actually nail it one time? Welcome the heaving frost crystals to the surface and determine to unearth GOOD THINGS. Prepare your heart in advance to showcase determination, patience, long-suffering, gentleness, kindness, and love.

Experience enough frost heave and you’ll find that the soil of your heart and life is well aerated and primed for Spring.

Denise Portis

© 2011 Personal Hearing Loss Journal

Random Definitions – Consider the Source

Published on by hearingelmo2 Comments

Aren’t definitions funny critters? Oh sure… you can use “Dictionary.com” or Merriam-Websters Collegiate “big enough to cause a hernia” dictionary to look up words. But the funny thing about the English dictionary? Words can mean different things. The words can EVEN mean different things – to different people. Some random definitions I have encountered in the last week include:

Now: To the mother who demanded the trash be emptied, it means immediately. To the 20-year-old son who will get to it eventually, it means sometime today.

D-cup: “What does ‘D-cup’ mean to you?” Response: “Male or female?” Speechless thought: “Wha’…   ?”

McDonalds: To the over-extended, ‘I forgot to thaw out the chicken’ parent, it means SUPPER. To the health-conscious, it means ‘heart attack in a bag’.

Snap: Daughter: “Oh snap, I forgot my key!” Mother: snaps fingers and looks quizzically at daughter. Daughter: (raises eyebrows and shoots an exasperated DUH look at mother…)

Normal: To a teenager, it means someone who “fits in”. To a dog, it means it can be eaten. To a person who happens to have a disability, it means “treated like everyone else”.

Yup! You often have to consider the source to understand how people choose to define common words. The word “normal” has cropped up a couple of times in the past several weeks for me.

First occurrence:

Kyersten and I were at Costco looking around and purchasing some bulk items to take back to Virginia for college. A lady did a double-take, looked at Chloe (my assistance dog), looked at my head and kept walking a few steps. However, she immediately stopped and left her cart, pocketbook and items and trotted over to where Kyersten and I stood to say, “Excuse me! Is that a cochlear implant?”

“Yes,” I replied.

“Oh my husband has one of those. How long have you had yours?” she asked with curiosity.

I preceded to tell her a little bit about my own activation 5 years ago and hearing health history. I was trying to keep an eye on her cart (with pocketbook that screamed, “Steal me. Someone steal me” in it), so was a little startled when she interrupted my nervous glances toward her cart to say, “But your speech! It’s so normal!”

In talking with her, it seems her husband was deafened at a young age and was essentially without sound for 27 years before he received his own bilateral implants. He evidently has a noticeable speech impediment. But what is “normal”? I have met late-deafened and congenitally deaf people from all over the United States. “Normal speech”? Some would argue my southern accent is not “normal” for the DC-Metro area. How one person with hearing difficulties speaks, is much like an individual accent. There isn’t anything “abnormal” about it. My son has perfect (selective) hearing, and he has a speech impediment. It is “normal” for him though. How pronounced his own speech difficulties sound, depends on how hard he chooses to enunciate words and regulate his speed. Who determined what “normal speech” was and determined the “yard stick” by which to measure all speech?

At Pearle Vision Center:

A lady and her daughter stopped to admire Chloe who was in a down/stay. “Oh what a beautiful working dog! Are you training her?”

“Oh! No… Chloe graduated 3 years ago. She’s always training, but I’m not her original trainer” I replied.

“Oh! You mean she is YOUR partner?” the surprised woman asked.

“Yes. She’s a hearing/assist and balance assistance dog. I am late-deafened and have Meniere’s disease”, I cheerfully replied.

“Oh wow… you look so n-norm- normal” she stuttered out (since she realized how inappropriate that was as soon as she started saying it!)

I just smiled and she walked away embarrassed.

Normal?

Very likely, this world would be a better place if people didn’t go around labeling others as NORMAL or NOT.

To someone, somewhere… you aren’t “normal” if you choose to define the word as “not like you”!

Denise Portis

© 2011 Personal Hearing Loss Journal